Rolling Back has been published in paperback and is available on Amazon for $6.99 ($6.64 for Amazon Prime members). There is also the Kindle version that costs $2.99. I have provided links to each of them below.

Writing and publishing Rolling Back as been a personally rewarding experience that I wouldn’t trade for anything. Several people have urged me to write another, and I will probably try. However I think I’m ready for a change of pace and may attempt a fiction novel next. I’d be interested to hear your thoughts.

This is the cover for my new book. The art is a slightly modified version of one of my late wife’s paintings.

My book, Rolling Back: Through a Life Disabled, has been published and is available as a Kindle version on Amazon. You don’t need a Kindle to read it, you can read it on any computer or any tablet for smart phone using the free Kindle app. Kindle owners who are Amazon Prime members can borrow it for free.

Rolling Back will be available as a paperback in a few weeks. Right now it is only in the Kindle format, but will be expanded to include other e-readers in three months. The price for the Kindle version is just $2.99. If cost is an issue I hope to be able to offer it free for five days on Amazon. When that happens, I will let everyone know.

It is time for my annual update of “Chronicles of Disability.” However rather than simply cover the changes that have happened this year, I have decided to add some new content. This is partially due to my work on a new book I am writing which will tell the story of the journey (or should I say forced march) that my wife and I traveled through the jungles of disability. My own struggle with inclusion body myositis began in 1985, 11 years before I was formally diagnosed, and it continues to this day.

Part of the new content is a gallery of photographs, some new, some from earlier posts on this blog. My goal is to eventually put the entire visual record of my attempts to adapt to inclusion body myositis in one place, organized in chronological order.

This past year has been very difficult. It began with grieving for my wife who lost her battle with myotonic muscular dystrophy October 11, 2012. That grieving process will probably never end although it does change and has become less intrusive on my daily life. During that time I have also experienced the worst decline of physical function of any previous year. Most of that physical loss has been focused on my shoulders, arms and hands. I can no longer hold a Beefeater on the rocks, a Johnny Walker Black with a twist of lemon, a Cadillac Margarita, or even a glass of Petite Syrah. I also can’t hold a glass of water, but that seems to be a minor inconvenience by comparison. Dressing myself is now completely out of the question as is holding a camera or picking anything up from the table, bed or floor. Eating has been reduced to a process resembling a scene from a Monty Python movie. Getting anything from a plate to my mouth involves a slinging motion that frequently sends food flying in unexpected directions.

Now before this pity party gets out of control, I should point out that I continue to find ways to adapt. For example, there is a terrific acrylic beverage cup on Amazon that I use for coffee, whiskey, and wine. It is lightweight, has a handle that fits my hand perfectly and is relatively inexpensive. I can sling it through the air, provided it is only half-full, and generally get it pretty close to my mouth. (There is a slightly larger mug that I use for water.) As to the photography, that problem was solved when I purchased my GoPro and installed the iPhone app to control it. (See an earlier post.) Eating remains an unresolved challenge although I would rather put up with a messy aftermath then resort to being fed. I can only imagine how the pressure to eat quickly and my swallowing problem would combine, with serious consequences no doubt.

Voice recognition continues to get better with each iteration. Now my new iMac with its Mavericks operating system has built-in voice recognition that is almost as good as Dragon Dictate but has the advantage of being launched immediately by simply pushing the function key twice. I still use Dragon Dictate for the longer projects such as this post.

When I was diagnosed in 1996, we lived in this large home with all the bedrooms upstairs!

Along with a business partner (not my wife, who is shown here), I had my own advertising agency in San Diego.

by 1997, I was falling a lot and using a walking stick for balance.

After a couple of falls down the stairs we were rethinking our two story home..

In 1997 we moved to a condo that was easier to take care of and had the master bedroom downstairs.

Our new condo had a huge Roman tub that was useless for me. So we had it jack hammered out and built a roll in shower in its place.

By 1998 I still only needed a pair of walking sticks or these forearm crutches.

Later I needed to use leg braces along with the crutches.

Beginning in 1998 I used this scooter for long distances.

By 1999 I needed a wheelchair to get around inside the house.

At the end of 1999, I had to close my business and I took up watercolor painting as a hobby.

This was one of the earlier paintings I did.

The Myositis Association invited me to come to the national conference and talk about the positive effect art had on my life.

To take my wheelchair with me I used a ramp van. Inside I transferred to the driver’s seat inside.

Back in those days, all transfers could be done by sliding on a transfer board.

To get onto and off the toilet, I could still do a stand and pivot transfer.

When my wife also got sick in 2006, we moved again, this time to a single-story home.

I added 200 feet of sidewalk so that I could get around the yard on my wheelchair

I loved to garden, and these half barrels made it possible for me to continue.

A few modifications turned an ancient bath into one that was modern, and completely accessible.

I took out the vanity and put in a sink that I could roll under.

I added a shower seat that folded down.

Having lost all dexterity, a bidet was essential for hygiene.

By now, I could no longer transfer within the van, so I added a driver’s side lock down for the wheelchair.

Hand controls were also necessary as I could not move my foot from accelerator to brake.

The new house had a workshop area and I made a lot of use of it for making special tools.

This hook was my most frequently used item. It could open drawers, car doors, refrigerators and lift Coke cartons.

I also made a lot of long poles with a hook on the end for reaching objects and pulling doors shut.

Here is a typical use for one of my sticks.

I made a leg lifter out of shelf liner and it worked great!

I bought a sewing machine so that I could make some of the aids that I thought of but could not find available.

One of my next adaptations was finding a way to use the tiny screwdriver that came with the sewing machine

I was doing most of the cooking but I needed assistance with opening jars.

I also couldn’t use a regular can opener but this one I found on Amazon did the trick.

We expanded the patio because the rest of the yard was gravel and wheelchairs can’t roll there.

I was still trying to paint, but I could not draw with pencil and paper. A new iPad took care of that problem.

Once I lost the ability to stand up on my own, I needed a ceiling lift to make transfers.

Me in a ceiling lift hovering above my bed.

That also meant I needed a different kind of clothing, so I designed and sewed pants that I could put on by laying them on the chair and fastening them around me.

Swollen legs are a major downside of spending so much time in the chair.

I tried many different designs before I found something that would fit onto my feet.

These “shoes” weren’t pretty but at least they covered my feet.

By 2010, driving was becoming very challenging and I started using public transit.

By 2011 it was obvious we could not manage alone. So we hired our first caregiver, Lucia.

But by 2012, even with help we were no longer safe to remain in our home. So we moved to Huntington Manor assisted living.

Here we are on a tour of the facility in the spring of 2012. We moved in shortly thereafter.

Much of our transportation needs were taken care of with MTS access, the San Diego Transit service for disabled.

The summer of 2012 my legs were so swollen that I had to take drastic action so I acquired a pair of CircAid compression garments.

Here you can see the dramatic improvements they made in just a matter of weeks. I still wear them.

Just five months after we moved to Huntington Manor, my wife, Beth, died. Of all the adaptations I have had to make, not having her with me is the most difficult.

When it became more difficult to raise a fork to my mouth, I got this mobile arm support. It helped, for a while.

I thought I would try to take up painting again, But my arms were too weak for conventional equipment. I designed this table which a neighbor built for me however it didn’t help.

Music has always been important in my life and I had played piano since the age of two. This Korg Nano keyboard has enabled me to do a little bit of composition although I can only use one finger at a time.

I don’t know what I would do without my GoPro. It is a great help for taking pictures around the facility to post on their blog.

This is me in late 2013, writing with voice recognition at my computer, hospital bed and TV in the background.

When my Work Table apron gets dirty, I just remove the masonite panel and throw the cloth portion in the wash.

I have had several requests for the patterns for some of my projects. Unfortunately, by the time I was doing the videos, I had lost too much of my finger dexterity to be able to draw well enough to create a pattern. Instead, I would use voice recognition to dictate instructions to myself. Following are the instructions for making an insulated apron for use in the kitchen.

These instructions can be modified for making a work table, by replacing the insulation and batting with a piece of hard board such as Masonite and leaving one end open.

We are making an apron 24 x 17 with two twelve inch straps with velcro fasteners. (NOTE THAT THERE IS NOTHING AROUND THE NECK!)

For apron:
Cut fabric with four and five eighths inches extra on ends and five eighths extra on sides.
Result is two pieces 33.25 x 18.25.
Cut insulation and cotton batting 16.5 x 20.
baste insulation & batting together with shiny side of insulation out.
Sew two fabric sides wrong side out the long way.
Turn inside out.
Insert filling (insulation, batting, with insulation facing top).
Run stiches across short ends to lock filling in place.
Use a wide roll hem (approx 2″)at each end.
Sew long edges to lock pellon in place.
Baste layers together and use walking foot to quilt the insulated surface.

For straps:

Cut two pieces of fabric 13.25 x 6.25.
Hem the short ends.
Sew the long seams inside out.
Pull them through to be right side out.
Cut two pieces of fuzzy velcro 2″ x 5″.
Straddle the seam with the velcro and sew in place.
Fold the opposite end of each strap and sew together.
Use reinforcement stiches to attach the straps to the hems of the apron.

I always keep an ergonomic grabber on my chair. (Attached with Velcro.)

Anyone who has trouble bending over, reaching down, grasping or pinching has probably found the need for a reacher/grabber. But most grabbers require you to have finger strength in order to operate them. That’s something I don’t have, nor do many others who suffer from inclusion body myositis or other disabling conditions. The best solution I have found is the tool called an ergonomic grabber. The difference is that it doesn’t require strong fingers to operate. As long as you’re able to squeeze a bit with the base of your thumb and the inside of your palm, you can operate it. I keep one of the smaller ones attached to my wheelchair with Velcro. I keep longer ones stashed around my room so that I always have one available when I drop something. They come at least three lengths that I know of. The link below is for the longest one but they are also available in 24 inch and 18 inch versions.

Spray cans are very frustrating for those of us with weak fingers. Mine have gotten to the point where i needed two hands — one to hold the can, the other to push on the button with my thumb! Try painting that way, or spraying oil into a skillet, spray starch onto a shirt, or lysol onto a countertop. Then I discovered the device shown here. It works for me, and that’s really saying something! I bought mine on Amazon. In fact, I buy almost everything there. Saves time, saves money, and I can’t drive to the store anyway.

With an appropriate mobile arm support, I hope to some day return to creating art such as Quiet Harbor now part of the Muscular Dystrophy Association Art Collection.

Since I was diagnosed with Inclusion Body Myositis (IBM) 16 years ago, I have been stubbornly maintaining my independence. I have made use of every technical aid that I could find, beginning with canes and walkers and scooters and ultimately graduating to wheelchairs and hospital beds and overhead ceiling lifts. I started with a swing away lift in the back of van to take my scooter with me wherever I went, then bought a van with a ramp and a transfer seat, and ultimately moved to a van with an ez-lok system in the driver’s position. All these were steps to allow me to independently get around. I adapted my bathroom and my kitchen so that I can could continue to cook et cetera. I adapted my studio, even my workbench in the garage. I designed and sewed special shoes, pants, and leggings. No matter what, this disease was not going to get the better of me.

Today I am reluctantly admitting that this is one battle that ultimately I could not win. IBM is too progressive, too relentless, too untreatable. The final straw came when my right shoulder and arm became so weak that I could no longer raise my arm much above my waist. This meant that it was no longer safe for me to drive. It also meant that I could no longer chop vegetables or stir a skillet. It meant that I could no longer hold a paintbrush and create art. And worst of all, it meant that I was no longer an appropriate caregiver for my wife, whose own battle with Myotonic Muscular Dystrophy was not going well.

The first thing I did was have my van converted once again, only this time in the opposite direction. I had the passenger seat moved over into the driver’s seat position and put the ez-lok on the passenger side. This meant that I could pull into the van and lock myself in on the passenger side — provided I had found a willing driver to take me where I needed to go. Fortunately, my friends and family and neighbor have pitched in and I still have been able to get around when absolutely necessary. Perhaps more importantly, my wife, who also can’t drive and who has more medical challenges than I, could get to her various doctor appointments. When drivers aren’t available we are able to get to appointments using the accessible bus transportation called MTS access. It gets the job done, but it is certainly not a convenience. I plan an article on the general subject of bus transportation (and lack there of) soon.

But the really big change I have made is to hire caregivers for the two of us morning and night. The loss of arm strength meant that I was at great risk of being stranded when trying to use my ceiling lift to get into or out of bed or onto and off the toilet. After several close calls and more than a few minutes of hanging suspended in a very painful and awkward position, I realized I simply couldn’t go it alone anymore. It is an expensive adaptation and one that we will not be able to afford indefinitely. But for now it is getting us through each day. In future articles I will talk more about the good points of having caregivers.

I am also searching for a “mobile arm support.” The right one might restore some of the functions of my right hand and could possibly let me try to paint again.

When my Work Table apron gets dirty, I just remove the masonite panel and throw the cloth portion in the wash.

I first took up sewing to fill my need for a special type of “apron/worktable” that would be helpful and safe to wear when in my power wheelchair. I demonstrate three of them and explain their fabrication in the video below. It is the first in a new Life! disabled Video Series. Future videos will demonstrate topics such as using overhead lift systems to remain independent, driving with hand controls, and using GarageBand on the Apple iPad to create music.

The New Year is often a time for reflection and introspection. So in 2010 I took this opportunity to review the highlights (ho ho) of my journey with inclusion body myositis, along with my wife’s struggle with myotonic dystrophy. This is my second annual update. Sadly, my wife’s struggle ended October 11, 2012.

Teddy Roosevelt had it right. He said “speak softly and carry a big stick”. Well, I speak softly (due to weak muscles caused by IBM) and I carry several big sticks to compensate for my weak hands and fingers.

In an earlier post I showed a simple hook for opening drawers and lifting soft drink cartons. My next most used tool is a ” hook on a stick”. It also takes advantage of muscles I still have to overcome the loss of others.

An all purpose stick made from a dowel and hardware store hooks.

Here are some of the ways I used it yesterday:

Guide my shorts over my feet and up to my knees.

Pick up the towel I dropped outside the shower.

Push dirty clothes into the washer.

Pull clean clothes out of the washer and put them in the dryer.

Pull dry clothes out of the dryer.

Pull open the bottom drawer of my dresser. (Lift out a pair of underwear and a pair of shorts.)

Open the crisper drawer of the refrigerator.

Pull out a pan from the cupboard.

Push open the lid of the trash can.

Pull the trash receptacle out from the wall.

Pick up a 12 pack of Cokes.

Rearrange items on the shelves of my studio.

Pull the front door closed.

Release the parking brake on my van.

Engage the parking brake on my van.

Besides pulling on pants, my stick is great for closing doors.

Obviously a tool this valuable can’t be limited to just one. I have nearly a dozen of them throughout the house and in my van. Fortunately they are quick and inexpensive to build:

You can make a valuable stick with just a few dollars in materials.

Materials: A dowel (3/4 to 1 inch), and two hooks.

Cut the dowel to the desired length.

Drill a pilot hole slightly smaller than the hook threads.

Drill a hole at each end.

Screw in the hooks. Even in my weakened condition, it takes less than half an hour, and saves a lifetime of aggravation.